Celebrating Phoenix

Wednesday, 10 October 2018

At this point readers should probably consider this blog as complete. Phoenix is 8, and our life keeps on moving forward a a big, messy family does - one day at a time at a pace where the days are long but the years are short. I don't feel as riled up about Down syndrome or disability as I used to, although it will always be a part of our lives. I still participate in my local DS group and I moderate my groups FB page if you would like to follow along and stay abreast of articles and blogs related to DS and the disability community. You can follow us here on the Calgary Ups and Downs FB page

To anyone who has followed along in our journey - I thank you. I hope you have learned a bit about parenting a child with DS, at least my experience of it, and I hope you can see the beauty and richness of our lives with Phoenix in it. Take care and peace be with you all.

Sunday, 27 August 2017

It's been a long time since I've published a post. I've got the same excuse as always that we've just been busy. Which is true, we ARE busy and I even went on leave from my job in June with the support of my school admin.

You see, at the end of May my mother was admitted to the hospital with stage 4 pancreatic cancer. In May, we all thought we would have more time with her before the unimaginable happened, and she died. In May, Mike called my sister and told her to come out to see my mom and to help me get her affairs in order so that she could just focus on the process of fighting the cancer (letting go). That was the end of May. June 8th she passed away. The same day the palliative care doctor thought that my mom might have 3 months left to live. The same day.

So it was a shock to is, just how quickly it happened. So that even though my sister and I had 42 years with her, and others in her family had many more years, it just wasn't enough. How could it ever be enough?

So it's been hard. Harder than normal. Harder than having 3 years old twins, who understand that grandma is with the angels and a 7 year old who stills goes down stairs hoping to see her beloved grandmother and asks to go lie in her bed, where they so me so much time in quiet company while my mom watched tv and Phoenix watched or played games on grandmas iPad. This is harder than Down syndrome. It's harder than the sleep deprivation of newborn twins. It's harder than failing at your first teaching job. Man, this is HARD.

Here are some pictures that I love of my mom, mostly with her grandchildren, whom she adored.

This is from the last vacation I took with my mom. We went to see my sister and her husband in Nova Scotia. This photo was taken in their coffee shop.

There aren't many pictures of my mom with the twins separated. Ash and Wren both wanted my moms attention simultaneously, and as a twin mom herself, she knew just what to do.

I put this one last because I wanted to set it apart. It was taken about 2 years ago when my mom went in for her hip revision. I feel like this photo perfectly captures the relationship these two had. They were just so devoted to each other and there was an utter delight in the two of them when they spent time together, and I can see the love right there, in the grasping of each others hands. I just miss her so much.

Monday, 3 April 2017

I took Phoenix to Edmonton last weekend for a head shot clinic for Changing the Face of Beauty. For a nominal fee the photographer took photos, provided props and provided clothes for the children to pose in. Phoenix chose this purple dress (her favorite colour) and refused to wear any of the clothes had picked out for her to wear. Gigantic sigh.

Regardless, the pictures turned out beautifully, and totally captured some of the expressions I most love seeing on her face.

When my first daughter was born with Down syndrome, I felt like my life was blown apart. It's been the hardest, most profound experience of my life, one which has made me examine my ideas around ability and disability. This is my life raising a child with Down syndrome (and alopecia) and identical twins. These are my thoughts on life, disability, Down syndrome, my family and me. You can also follow us on Instagram @celebratingphoenix